1. Experiences of Open Access in the not-for- profit sector Zoe Hughes Policy and Research Officer Care Alliance Ireland Open Access Week 23rd October 2015

2. Care Alliance Ireland Umbrella Organisation- 100 members Established in 1995 Focus on “macro advocacy” for Family Carers and those providing support to them Research Policy work Representation at State level Communication Sharing of resources National Carers Week

3. Family Caring in Ireland Family Carer: “someone who provides regular unpaid personal help for a friend or family member, with a long term illness, health problem or disability.” Census 2011 187,000 Family Carers in Ireland 4,228 under 14 Provide over 6 million hours of care per week- upwards of €4billion worth of care every year

4. Family Carers & Health Less likely to report themselves in good health High levels of stress, emotional strain, social isolation (Care Alliance 2008; Carers Association & Irish College of Psychiatrists, 2009) High blood pressure, tiredness, back problems, arthritis (Carer Alliance Ireland, 2009) More likely to binge drink, smoke, etc (Hoffman, G.J. & Mendez-Luck, 2011)

5. “Open For Collaboration” Not- For- Profit Not-for- profit Academia “The Researched”

6. Not-For-Profit + Not-For-Profit Benefits Mutual shared goal- USUALLY Understanding of funding concerns etc. Different angles on same information Challenges Competition- healthy & unhealthy “Chasing funding” can become overwhelming Recent “scandals”

7. Not-For-Profit + Academia Benefits Access to resources Opportunity to set/ impact agenda for research Government like it/ may carry more “weight” Challenges “Ivory tower” still exists in some sectors “Publish or perish” NFP seen as gatekeepers and providers of “subjects”

8. Not-For-Profit + “The Researched” Benefits Inclusive research- best practice Less paternalistic Grounded Challenges Time-intensive Those being researched have massive commitments

9. Care Alliance & Open Access Ensure all our research documents are freely available Budget for research to be added to OA journals Encourage comment from Family Carers themselves- research has to be accessible "Plain English" research reports

10. Some statistics… Website reach: 58,000 downloads (2014) 16,715 visitors (2014) Over 3000 downloads of “Family Caring in Ireland” overview report (2013-2014) ~500 downloads in 5 days of “Defining Carers” discussion paper

11. Thank you Contact Details zoe@carealliance.ie www.carealliance.ie @CareAllianceIRL